The TAG Family Weekend is taking place on 1-2 October 2016 – and it needs you.
The Arthrogryposis Group (TAG) UK is the national support group for people with Arthrogryposis and their families, founded in 1984 by Diana Piercy. Around 200 babies are born with Arthrogryposis each year in the UK, and TAG’s goal has always been to reach out to as many of them as possible. At a time when families may feel quite alone, TAG’s members aim to to share what they have learned about living with Arthrogryposis.
Today, finding out information about Arthrogryposis is easy enough; the internet can tell you almost anything you want to know with a simple search. It can also frighten the socks off you, and leave you shocked at what might be ahead. To let you know that you are not alone finding other people who know what you are going through can be a literal lifesaver. Living with Arthrogryposis isn’t a bed of roses but it’s not the end of the world either.
Hospitals were never that good at providing information to help you live with a diagnosis. Specific support groups fill that gap, with more information leaflets to explain things and, above all, people who know what it is like to be you.
The benefit of sharing experiences with someone who knows exactly what you’re going through is priceless.
Running a charitable group is not easy.
Rules and regulations can make it impossible for a small charity like TAG (UK) to do seemingly everyday group activities, such as hold a camp for children or run a conference weekend. Risk assessments for every single activity you “might” want to do, checks on volunteers etc. all cost money, before you even think of the actual cost of the event you want to hold.
Raising money to run an office isn’t sexy and lots of charities discovered finding money to keep administration tasks going almost impossible. Grant-making bodies like to see projects, lots of different, exciting projects, not run-of-the-mill providing a point of contact for the new mother who has no one to turn to.
With the loss of our National Contact Officer a couple of years ago, responsibility for the administration of TAG (UK) fell on its members. I was one of those in 2014 and had some ideas I thought might work. Unfortunately, I was sidelined by that diagnosis of Crohn’s Disease in January 2015, and had to resign after having major surgery. Whatever TAG needed it wasn’t a Chair who could only give half an effort to the job.
I wasn’t the only one to encounter personal difficulties, and over the coming months other members of that enthusiastic committee were also sidelined by events none of us could have foreseen. Now TAG is once again struggling to survive.
TAG Needs You
It might be a cliché but it’s true; any group is only as good as its members. TAG has great members, and it needs them now more than ever.
We all have experience we can share to help others as they begin the journey of living with Arthrogryposis.
- Are you a parent who can help someone else navigate the health service to find what they need?
- What’s it like to enter the school system today?
- Have you helped your child with AMC into the worlds of university or work?
- How do you manage transport needs?
- How do you cope with personal needs?
- What do you do for hobbies or interests?
- Have you found a great holiday destination?
- Are you good at organising?
- Do you love writing? Help get a newsletter off the ground.
- Are you a dab hand at making eye-catching graphics?
Consider sharing with the TAG membership your skills and the experiences you’ve had. Make TAG the support group you want it to be, not just for yourself but for all those to come.
TAG Family Weekend Information
The TAG Family Weekend is only 6 weeks away. Here’s some more information from the Trustees: